5 emotions which turn into Chronic fatigue.

pamojja

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1) A diagnosis with no test will mean people spontaneously recover anyway. Including Cancer with no Cancer test.
2) If you believe CFS is Fukuda CFS and nothing else, then yes, people do recover from CFS, end of debate.
3) If you however believe there is an organic disease or diseases within CFS, then there is zero evidence anyone has ever recovered from these since it's inception in 1988 as we don't know what CFS is yet and thus cannot respond to stories of recovery with honest acceptance of these stories as 'fact' as we don't know what these people had wrong with them to begin with, including themselves!
With CFS we don't have the evidence that it is organic. With cancer and CVD we have. 100s of verified radical remission stories documented in literature. With CVD we have, or rather in my case have the MRI pictures and ultra sound documentation. So there is the 5th possibility of processes which lead to remissions, we simple don't fully understand yet.



During the course of the study, Kelly identified more than seventy-five factors that cancer survivors said they used as a part of their healing journey. Nine of these factors were used by almost every one of them. They are as follows:
http://www.radicalremission.com/
There is no straight line to be drawn. That would be most satisfying and we'd all be significantly better by now.
Only that straight lines drawn and a century of research in CVD and cancer, most with such a disease aren't better by now (with the exception of 3 well defined cancers). Just a 1-3% improvement of 5-year mortality, I never would be satisfied with.

You have cfs and you're actually sticking up for Mickel therapy?
No I don't advocate anything, particularly not self-help approaches, which could be had much reasonably priced with other avenues. However, I don't deny everyone's right to tell their own story. However weird it may sound. Because I myself have such a incomprehensible remission story, where a multi-factorial approach to a purely physical CVD brought it about.

With a much less researched condition like ME, and me having realized how research in pharmaceutical compounds is set up (just for profit and a 1-3% improvement in 5-year mortality in major chronic diseases), I do stay open-minded to all options. And respect everyone's decision not to.

In the end each will be the responsible for one's decision. And in my case I'm simply glad to have rejected standard medical procedures against CVD, and followed anecdotal evidence instead. An other would have to be glad with his decision to follow the standard medical procedures, and the evidenced 1-3% 5-year mortality reduction only.
 

pamojja

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What did you do to get better ?
The basics told in my introduction thread:
http://forums.phoenixrising.me/index.php?threads/am-i-right-here.50197/

Here a short version of what Linus Pauling recommended:
http://forums.phoenixrising.me/index.php?threads/beware-of-ascorbic-acid.50456/#post-832295

For reducing sympathetic dominance (measured with heart-rate-variability) I do Vipassana-meditation (which doesn't costs a cent) and tried systemic family therapy for 1 year. Sadly, the therapeut with lots of good references, showed untrustworthy to me in the end (paid by insurance with a little 10% self-pay).
 
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pamojja

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Yes we do. See the 2-day CPET, or Tilt Table Test, or cytokine testing, etc.
I meant on the level of MDs available through general health care for getting a diagnosis. They all still wrongly think it's a psychiatric disease, and refer to them for a diagnosis. If there is a blood marker they aren't able to treat, they're not interested.

Even here it's similar to CVD, where most MDs are only interested in testing things they are able to treat, like cholesterol, blood pressure, insulin resistance,.. - with the meager treatment outcome of 1-3% 5-year mortality reduction. But just as important markers to track to see if you're improving, like homocysteine, Lp(a), ApoA and B, fibriginogen, thyroid and other hormones, etc. more often aren't. Though there would be enough natural intervention to get them more favorable.

I simple couldn't go to a MD with a 2-day CPET or cytokine panel and could expect them to be able to interpret it as ME and give the diagnosis, as I'm able with a MRI and ultra sound for CVD.
 
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Snowdrop

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I meant on the level of MDs available through general health care for getting a diagnosis. They all still wrongly think it's a psychiatric disease, and refer to them for a diagnosis. If there is a blood marker they aren't able to treat, they're not interested.

Even here it's similar to CVD, where most MDs are only interested in testing things they are able to treat, like cholesterol, blood pressure, insulin resistance,.. - with the meager treatment outcome of 1-3% 5-year mortality reduction. But just as important markers to track to see if you're improving, like homocysteine, Lp(a), ApoA and B, fibriginogen, thyroid and other hormones, etc. more often aren't. Though there would be enough natural intervention to get them more favorable.
Science is not a static thing. And medicine as an institutional behemoth will always lag behind what can be known about biology. This difference is the opening for where speculation thrives.

Often too newer technologies are what is needed to change the paradigm.

As far as the disease this board is about -- sadly there is much misinformation because of a deliberate blurring of the disease with the name of a symptom (chronic fatigue) which is vague and can be attributed to many illnesses.

For what it's worth, here is an explanation of the latest research: http://www.meaction.net/2016/08/30/naviauxs-metabolism-paper-is-about-as-big-as-you-think/
 

pamojja

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Science is not a static thing.
I really wished this would hold true for the science about CVD and cancer. The chronic diseases which will kill most of us. But it's success remained at only 1-3% reduction in 5-year mortality. Too static for my taste and a century of research.
 

barbc56

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[QUOTE="pamojja, post: 842169, member: 29407"But it's success remained at only 1-3% reduction in 5-year mortality. Too static f[/QUOTE]

What is the sucess rate of alternative medicine?
 

pamojja

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What is the sucess rate of alternative medicine?
Since there is no money to be made from natural compounds which can't be patented, no expensive RCT are done do get them approved as treatment. So there is no large scale scientific evidence at which rate it succeeds compared to the available almost non-effective pharmaceuticals. Which also always do carry risks. ..must sound like a broken record already.

However, lack of evidence isn't proof that natural medicine wouldn't work. And especially in view of it's low risk in my opinion always worth a trial. I can only report my n=1 experience. Your are free to take or leave it. I only expect everyone to let me freely decide after an own benefits/risk evaluation, what I'm willing to take as consequences.

In the end each will be the responsible for one's decision. And in my case I'm simply glad to have rejected standard medical procedures against CVD, and followed anecdotal evidence instead. An other would have to be glad with his decision to follow the standard medical procedures, and the evidenced 1-3% 5-year mortality reduction only.
 

Woolie

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@pamojja why not start a thread in the alternative therapy category to discuss this topic? There you may find people who are receptive to what you're saying. I did suggest this earlier, but to no avail.

Or better still, read about what others are saying there for a few weeks first, ask questions, and then make your contributions.

I've encountered a lot of the arguments you're making in my 27 years with CFS. Sometimes they have been used to blame me for being ill. I come here to PR to get away from all that.

When I hear claims like healing yourself from cancer through the right thoughts and "natural remedies", my blood really boils. That is deeply offensive to people with cancer who don't get better - like somehow they didn't try enough. I'm honestly finding it hard to keep my temper from exploding here, and I'm sure other members are too.

If your main illness is CVD, perhaps you will find a forum on that topic with a more receptive audience? At least that disease is taken seriously, so people might have had less bad experiences with these kinds of loose ideas. I do suspect that if you have CVD, your fatigue may be a consequence of that. I'd suggest starting there anyway.
 
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pamojja

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At least that disease is taken seriously, so people might have had less bad experiences with these kinds of loose ideas
Absolutely not. If you read my many comments here you already know that with CVD you get a few pills prescribed, maybe urged for a invasive surgery and send off. If one searches the scientific evidence for those 'treatments' one sees they prevent 1 in 83 patients from premature death at best. Is that being taken serious in your eyes??

CVD patients after mercilessly deteriorating joining CVD forums had not less experiences with these kinds of loose ideas at all.

When I hear claims like healing yourself from cancer through the right thoughts and "natural remedies", my blood really boils. That is deeply offensive to people with cancer who don't get better - like somehow they didn't try enough. I'm honestly finding it hard to keep my temper from exploding here, and I'm sure other members are too.
Sorry. But there was a study by a MD initiated by her surprise that despite all those numerous 'spontaneous' cancer remissions been documented in the scientific literature, nobody ever investigated what might have have been different with them. She set out to impartially interview many of them. Thereby could identify up to 75 factors with them. Only 9 common to almost everyone. That doesn't explains a plausible mechanism, or why someone other who could have all 9 of those factors still would die. But it sure is interesting preliminary research for every one with cancer.

I can't explain why such much needed groundwork research is making you boiling. It's in no way offensive to cancer patients. On the contrary, I feel great joy for those few lucky ones.

Off course, hinting at 'boiling', being 'offended', or being about to 'explode' because of such simple preliminary research proofing nothing yet, is surely a way to silence a perspective which one doesn't want to hear for a completely different reason.

I've encountered a lot of the arguments you're making in my 27 years with CFS. Sometimes they have been used to blame me for being ill.
You're mistaking me for someone else. All I said from the beginning was that not letting emotions solidify and edify helps at least to feel more at ease. That's my everyday experience. Why you would want to silence that?

I blame no one for being ill. And I don't give the impression that any particular method, be it physical or mental, could already be the cure for ME. Or CVD.

My only fault was joining in a discussion which was about the claim that 5 emotions are the cause of ME/CFS - which I too wouldn't agree with. Just the indulgence in such emotions of unease seemed so counter to me. And here I indeed wanted to warn: What are we doing with our precious energy?

I do suspect that if you have CVD, your fatigue may be a consequence of that. I'd suggest starting there anyway.
Yea. My MDs also think all I would have to do is to follow their advise, take a Statin and a Aspirin each day till my death and everything will be fine. :(

I come here to PR to get away from all that.
Me too. I can only appeal to all individuals in this community: Don't do to others wrong, only because others have done wrong to you.
 

Woolie

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Absolutely not. If you read my many comments here you already know that with CVD you get a few pills prescribed, maybe urged for a invasive surgery and send off. If one searches the scientific evidence for those 'treatments' one sees they prevent 1 in 83 patients from premature death at best. Is that being taken serious in your eyes??
Yes. If you have MECFS, you simply get told you've got a false belief that you are ill. You are sent off for reeducation. How can you not see the difference here???

Its awful having any disease, and I'm sorry you're so unwell with CVD. CVD is a nasty, life destroying, and life shortening disease. And as you say, medicine has not yet come up with treatments that work consistently. But this does not mean the disease is not taken seriously. Its taken very seriously.
Sorry. But there was a study by a MD initiated by her surprise that despite all those numerous 'spontaneous' cancer remissions been documented in the scientific literature, nobody ever investigated what might have have been different with them. She set out to impartially interview many of them. Thereby could identify up to 75 factors with them. Only 9 common to almost everyone. That doesn't explains a plausible mechanism, or why someone other who could have all 9 of those factors still would die. But it sure is interesting preliminary research for every one with cancer.
Here is the problem: What if some of these things actually don't work - it was just a coincidence? Survivors report all sort of things they think might have contributed to their survival, and many won't be confirmed if you do a prospective study (a prospective study is when you take a group at the beginning and see who recovers and who doesn't. Instead of only asking the people who actually recovered after they recovered).

Now think about it: how will people feel if they try these useless treatments believing fully that they will work, and then they don't? At the very least, crushingly disappointed and probably a lot less wealthy. But they may also feel they have personally failed, that somehow, they weren't thinking the right thoughts or 'doing it right' or something. Or worse still, they will reject some treatment that actually works - with potentially disastrous consequences. False positives in medicine (concluding something works when it doesn't) are not good for anyone.

If you want to reply to this post, I really recommend you don't reply here. Start a new thread, and include it in the Alternative Therapies section under Treatment and Therapies. If you want me to see it, you can tag me.

PS Although I personally am very worried unsubstantiated claims in health, everyone has the right to consider alternative treatments that may be useful to them. That's why there is a dedicated place to do that. Its kind of an accident that you ended up posting here. If you post in the alternative section, you should receive a much warmer response. Just don't go around saying that doctor's attitudes to CVD are in any way the same as those to MECFS, that will not win you friends.
 
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